Has anyone heard of pectus excavatum?

[soocool]

If so, do you or someone you know have it? Has it been surgically corrected?

 

[LostSapphire]

If you google it just like this: pectus excavatum

you will get quite a few websites. There are even videos of surgery that come up within the first 25 hits....

Good luck. I''m off to learn a new thing.

LS

 

[oobiecoo]

My childhood best friend had that! He had asthma... I wonder if it was caused by the pectus excavatum. He never had surgery but I think its less noticeable now that he is older.

 

[aliciagirl]

One of my ex-boyfriends had it. His wasn''t really that drastic and didn''t cause him any health problems. He did a lot of strength training of the chest to try to build muscle so that it wasn''t as noticeable. He was very sensitive about it, but unless he mentioned it, no one could really even tell.

 

[LauraBabe08]

My Fiance has that. He is very tall and lean, and it is not super noticeable, unless he wears tight-ish shirts. I think its cute and I don''t mind it at all. Either does he.

 

[Lorelei]

We do have some doctors here who might be able to give more info too Socool.

 

[LtlFirecracker]

I have seen a ton of it. It is fairly common. It is mostly a cosmetic problem and is usually it is not corrected unless it is so severe that it is decreasing the overall lung volume to the point that air exchange is compromised. It does not cause asthma, that is a problem with your immune system mistaking stuff in the environment for a disease and reacting by constricting the airway and sending immune sells into the airway spaces, which together, give less room for air exchange. Asthma is a type of an allergic reaction, but it is in your lungs.

 

[honey22]

Thanks for starting this thread! I just realised what my 7 year old nephew has! He was born with it and no-one thought it was even a problem. I just called my MIL and she''s not sure if his Mum realises what it is. It''s not very severe, but quite distinct. She is going to have a chat with her and take my nephew to have it reviewed as noone has done anything about it since he was born. Might be a good idea to check his lung function etc, as he does suffer from breathing problems.

 

[iheartscience]

My former coworker's son had it pretty severely and it definitely affected his breathing and lung capacity. That became really obvious once he got to high school and started playing high school basketball and couldn't keep up with his teammates. He got the surgery in his sophomore year and there was an immediate improvement in his breathing function.

ETA a friend of mine from college also had it but it was less severe and he didn't need the surgery because it didn't affect his breathing.

 

[soocool]

Date: 2/28/2009 12:20:28 AM
Author: honey22
Thanks for starting this thread! I just realised what my 7 year old nephew has! He was born with it and no-one thought it was even a problem. I just called my MIL and she''s not sure if his Mum realises what it is. It''s not very severe, but quite distinct. She is going to have a chat with her and take my nephew to have it reviewed as noone has done anything about it since he was born. Might be a good idea to check his lung function etc, as he does suffer from breathing problems.

I guess my daughter has had it for a while.I really never thought anything of it and I guess the doctors never picked up on it until she complained about being out of breath, etc after physical exertion. It is not too bad, but we had a pediatric cardiologist check her out just in case. They did an echocardiogram and everything was fine with the heart, but the pectus is definitely pressing or pushing the right atrium and right ventricle out of the way. She might have some slight discomfort when she exerts herself too much, but her heart is fine and the cardiologist said she does not need surgery to correct it.

I am glad that your nephew will be checked out to make sure everything is fine!

 

[soocool]

Date: 2/28/2009 9:39:44 AM
Author: thing2of2
My former coworker's son had it pretty severely and it definitely affected his breathing and lung capacity. That became really obvious once he got to high school and started playing high school basketball and couldn't keep up with his teammates. He got the surgery in his sophomore year and there was an immediate improvement in his breathing function.

ETA a friend of mine from college also had it but it was less severe and he didn't need the surgery because it didn't affect his breathing.

Its great that your former coworker's son was able to have the surgery and that it helped him breathe better.This is definitely something I never heard about until the doctor told us and my daughter is now 16 and has had physical exams done every year. Makes you wonder if some doctors really are thorough in their examinations. I guess as patients and parents or children of patients we have to note things down that we want the doctor to check out even if it seems rather insignificant at the time.

I should add that my daughter also has slight scoliosis that was caught by her 7th grade school nurse and because of her tall stature and thinness her cardiologist wanted her checked out for Marfans or MASS Phenotype. He doesn't think she has this because there is no family history of Marfans on either side and both my husband and I are very thin (great metabolisms I guess), but he wants to play it safe. What this means is that he will do another echocardiogram next year again to make sure she does not have mitral valve prolapse or aortic dissection. She also has to have a yearly slit lamp eye exam to check for retinal detachment per his recommendation. Our family doctor disagrees with the cardiologist, but I think we will do the echocardiogram and eye exams anyway to be on the safe side.

 

[LtlFirecracker]

Glad they are being careful with her.

For the Marfans, that can be diagnosed by a physical exam, eye exam, and echo (which she already has), it might be worth your time to have someone settle that question, even if it is not likely. Once the question is settled, yearly exams should not be necessary.

 

[diamondsrock]

Date: 2/28/2009 11:58:03 AM
Author: soocool

Date: 2/28/2009 9:39:44 AM
Author: thing2of2
My former coworker's son had it pretty severely and it definitely affected his breathing and lung capacity. That became really obvious once he got to high school and started playing high school basketball and couldn't keep up with his teammates. He got the surgery in his sophomore year and there was an immediate improvement in his breathing function.

ETA a friend of mine from college also had it but it was less severe and he didn't need the surgery because it didn't affect his breathing.

Its great that your former coworker's son was able to have the surgery and that it helped him breathe better.This is definitely something I never heard about until the doctor told us and my daughter is now 16 and has had physical exams done every year. Makes you wonder if some doctors really are thorough in their examinations. I guess as patients and parents or children of patients we have to note things down that we want the doctor to check out even if it seems rather insignificant at the time.

I should add that my daughter also has slight scoliosis that was caught by her 7th grade school nurse and because of her tall stature and thinness her cardiologist wanted her checked out for Marfans or MASS Phenotype. He doesn't think she has this because there is no family history of Marfans on either side and both my husband and I are very thin (great metabolisms I guess), but he wants to play it safe. What this means is that he will do another echocardiogram next year again to make sure she does not have mitral valve prolapse or aortic dissection. She also has to have a yearly slit lamp eye exam to check for retinal detachment per his recommendation. Our family doctor disagrees with the cardiologist, but I think we will do the echocardiogram and eye exams anyway to be on the safe side.

I can relate to what you are talking about. My son is 16 and is being evaluated for Marfan's as well. He is tall, thin, has the chest wall indent (not too severe but obvious), is nearsighted, etc... He pretty much has the Marfan body type. I actually was the one who brought it up to the doc as I had heard of it and thought he should be checked out. He saw a pedi. cardiologist two years ago and he said he seems ok but to come back in two years to retest (that will be this year). The main thing they look for the is aortic dimension measurement and the mitral valve as you said. He'll have another echo again this year to measure it. He also will have yearly eye exams. I was pretty annoyed last year as his opthamologist refused to dilate his eyes for the slit lamp, saying it wasn't necessary and he could just tell that his lens was not dislocated without dilating them. I am going to ask the cardiolgoist for a recommendation to another opthamolgoist who will do the correct test. The process can be pretty stressful! One thing I know is that kids can have the marfan body type without the associated connective tissue disorder part.
There is no harm in checking it out, that's for sure. I'm not sure why your family doc disagrees with the cardiologist? Does he not want her checked out again? I do know that as a parent, sometimes you really have to push to get things done. Some doctors are very laid back and not thorough enough.

 

[soocool]

diamondsrock: it wasn''t until I asked for a copy of the pediatric cardiologist''s report, did I know what it said. I asked my family doctor about it and I guess since he does not know much about Marfans he just dismissed it. I think you need to find doctors who know about Marfans. I never would have thought of it on my own. (BTW, my daughter is nearsighted also since age . The scoliosis is only 11 degrees (stayed the same after 3 xrays in the past 3 years), but she wasn''t evaluated by an orthopedist, just our family doctor. The pectus is not too bad either since the cardiologist doesn''t think she needs surgery. It is just the possibility of heart and/or eye problems that bother me.

What I like to know is how do they rule out Marfans or how do they decide it is Marfans.

 

[diamondsrock]

I'm pretty sure there is a set of diagnostic criteria that they have to meet in order to be diagnosed with marfan's. It is very specific. If they don't meet all the criteria, they aren't classified as marfan's. However, the specialist told me that there is a wide range of severity with this disorder, from very mild to very severe, sometimes apparent at birth in the severe cases. If someone is suspected of having it, or they are a borderline diagnosis, they are followed for a while to make sure things stay the same. People who are actually diagnosed with marfan's must have yearly echos I think indefinitely, plus maybe other tests as well. Some are put on medication.

I definately agree it is worrisome, but good that it's getting checked out. I knew of Marfan's myself because I heard about it on tv or something ( I think I was following the John Ritter story) , but I didn't know what it was so I googled it one day and saw that my son had a lot of the physical characteristics. I brought it up to his pediatrician at his yearly physical. He agreed and gave us the referral to the specialist.

Not all marfan cases are connected to a family history, only about 75% are. So the other 25% are just spontaneous. The specialist we saw actually suggested my husband and I also have echos (which we did and they came out ok) just to be sure there wasn't a family history there. My husband is adopted so we don't know anything about his side of the family. The Dr we saw was involved in pediatric genetic cardiology so he knew a ton about it. I agree most doctors don't. Our pediatrician also had us see a regular geneticist as well, which I didn't think was necessary since we were seeing the other doc, but went anyway. Most pediatric cardiologists are well aware of marfan's. I just think maybe some pediatricians aren't (they can't be specialits in everything I guess).

This website is very helpful and covers pretty much any question you might have about it. www.marfan.org

It was helpful when I was told that some people just have the marfan body type and that's all. I am actually average height but have flexible joints (I can bend my fingers back 90 degrees!), very long fingers, long face, crowded teeth before braces, high palate, am nearsighted, flat feet, etc...I do know quite a bit about the disease now after I did my research. Many people have some marfan skeletal characteristics but do not have marfan's.

Check out the website, it can answer your questions. You are the only person I've spoken to who is also going through this so it's interesting to hear your story as well.

 

[LtlFirecracker]

There is a set of diagnostic criteria. There are genetic tests, but Marfan's is a clinical diagnosis, meaning a good physical exam, echo, and eye exam are enough, if the doctor knows how to diagnosis it. It is not jut being tall and thin, people with Marfan's have longer arms and legs, and ratios can be done on based on ones measurements. Also the fingers are long. If the thumb and pointer finger are wrapped around the wrist, they overlap, and the thumb is longer than the palm of your hand. There are several other features that could help as well.

A pediatrician who specializes in genetics will take the eye exam, echo, and do all these measurements to determine if one has Marfans. If you can see one of these doctors, I would think that would be good because if your child does not have marfan's, you could save yourself a lot of worry. And also, new research is showing that if someone does have Marfan's, there is a medication that could slow the progression of the disease, especially the aortic root dilation. Either way, I think it is a question that should be settled sooner rather than later if possible.

 

[Feralpenchant]

You know it''s funny that you mention that.. my past 4 relationships over the years have been like this..

Guy A had pectus excavatum BAD, you could eat cereal out of it! Not that I did, those were his words! Haha.

Guy B had the OPPOSITE, pectus carinatum.

Guy C was also pectus excavatum. Not as bad as Guy A though.

Guy D (almost Fiancee, crosses fingers) has a slight case of pectus carinatum as well.



I guess I just like to date guys with interesting.. chests..?

Guy A DID have it surgically corrected.

 

[AprilBaby]

Mt first thought was also Marfan''s syndrome.

 

[cara]

saw title, thought, maybe that''s a spell from Harry Potter?